Need advice and other peoples stories!

Women's health
1

Ok I'm writing my own as the posts I've found that relate to me are many years ago so want people up to date.

I came off the pill December 2013, had a couple of normal periods but each one was getting further and further apart and then I didn't have one for about 3 months.

I was diagnosed on July 1st this year with pcos and it was shortly after on the 11th I started bleeding, it's now 12 1/2 weeks later and I'm still bleeding/spotting, it varies in colour and heaviness which is why I've put bleeding/spotting, now and then I get a fews days off, I feel lucky when I get 1 day off. I've had 23 days off and 65 days on in the last 12 1/2 weeks. I've actually just had 3 days off and it started again this morning.

My doctor is sending me for another scan before he puts me on anything. So with the stress of all this and I'm worried about the results of another scan in case there's something else, me and my partner of 5 years are also trying to concieve but not getting many opportunities with the bleeding situation.

Anyway what I want to know is people with pcos and getting prolonged bleeding, because it's not a commonly known symptom, everyone thinks you only have irregular or absent periods even my doctor thinks that but I've been reading on the internet and there are so many people with only pcos that are having to much bleeding rather then none at all. It's ridiculous how little doctors actually know about this condition.

My sister also has pcos she said years ago she went 2 years without a period, but she now has periods week on week off, she also has a almost 3 year old son.

I've had a lot of symptoms, from not bleeding, prolonged bleeding, hair, weight (I was 8st8 and size 8 at the beginning of June I'm now 9st 5! Size 10/small 12, Only 4 months later) I always feel down, I need some good news! and help, if your going through what I am and how to get the weight off its pretty much just gong to my belly sad 

2

Hi.  

I am really glad i came across your post.  I can identify with your concern around prolonged bleeding, as it seems a much rarer PCOS symptom.  I frequently have 10 day bleeds with spotting in between.  I tend to have a 2-3 day mini period at the beginning of the month and then the rest of the month is a random mix of blood on wiping, or differing degrees of watery discharge and those sigh of relief "no show" days throughout the rest of  the month until the 10 day period comes back round. Sorry about the Too Much Information (TMI).

I also get paranoid about what's going on, as I suffer from IBS and I am always convincing myself that it isnt IBS and is something worse.  I am actually quite a rational person in all other ways but when it comes to medical stuff I can over think it all.

I got my facial hair under control using one of those home lazer things, a bit pricey but was the best thing i did, wish i had bought it years earlier as would have saved those embarassing times at work, when you realise that you are in need of a bit of a tidy up.

For the diet side of things, have you tried going diary free? This seems to help the weight loss, worked for me for a while but then I fell back into old habits and the weight is going back on.

Going to a specialist gynae GP on Monday, to get myself checked out again. I am hoping she can put my overactive imagination to rest, carry out some tests and prove to me again that it is just PCOS and maybe offer some more practical advice.

I hope you are feeling better!!

3

Hey, how old are you if you don't mind me asking, and how long have you known you have pcos? Do you have any kids? I'm 22, 23 in April and I've always suspected something.

How do you cope? I take each day as it comes as everyday seems different, some days are really hard and I don't cope, I'm often moody because I'm worried and don't like to talk about it. 

Yeah I know what you mean, when I stopped for a few days I was so relieved but one morning when I woke up and went to the toilet and it was back I just felt like crying. For the last week mines been unusually light but I feel on edge like it's going to come back drastically when I don't expect it.

Don't worry about to much information! Enough information gives a better understanding. We're all females going through the same stuff. My doctor thought I had IBS ages ago, the tablets he put me on didn't help so I don't really know what's going on in that area whether I have or haven't got something but if I experience anything in that area or any area I just deal with it, I tend to suffer in silence with everything anyway!

Home laser? Like the home IPL machines? I've been looking into them for months mainly the Philips ones but don't know if they'll actually work, but I really want one! If it makes my life easier I don't care about the price. What one have you got? what colour skin and hair have you got? I've got olive skin and dark hair so a bit skeptical, when I read reviews no one put what skin and hair they have.

I'm going to try something soon, most probably dairy free as I'm quite fussy so couldn't give up to much or I'll starve, and I can't stick to liquid diets as I like to dig in smile I'll get there soon.

My next scan is with a Gyno apparently, I keep chasing them up and they said I should have a date by the 3rd Nov. So I'm going to write down any questions I have and try to get some answers and find out what's actually going on with my body! I think having an overactive imagination is mostly due to being unaware, and not knowing because we haven't got sufficient help & support so we're going to constantly think of the worst and such scenarios until we have our answers. I'm still worried I have something more serious, I need to see someone. Did your doctor refer you to a gyno or is it private? I can't see one unless I'm referred.

Thanks for commenting! means a lot. It's nice to hear from someone in the same boat. Keep me posted, let me know what happens at your appointment, I will too. Fingers crossed we get some good news. Take care speak soon and hope things get better!! 😃

4

I am 34, My PCOS was informally diagnosed when I was 26, formal scan diagnosed when I was 32. Always had painful periods, and a few months a year I get shooting pains in my side during ovulation ever since my periods started when I was 15. However the prolonged and irregular bledding started when I was 30/31.

No kids, my partner and I have been navigating that mine field for the last 12 months or so, we are a gay couple so all sorts of moral dilemmas as well as practical ones to consider.  Before I can have any sort of fertility treatment I need a BMI of less than 29 – which is about 12 stone. I have friends who have PCOS and conceived through IVF, I am also aware of other PCOS women who have conceived naturally but not always an easy road.  My advice would be as soon as you know you want kids and you have a partner who feels the same then start to get things in order. We are likely to adopt but that it is more about my relationship rather than the PCOS. I still grieve over the probability of never experiencing pregnancy but that’s for another story!

Back to the practical stuff, I bought the Philips Iumea, I don’t have the patience to use it on other areas of my body, as would take an age to do a leg!  but on my face it took about 2-3 months to realise that the hair growth wasn’t reoccurring. The freedom is great.  I have dark hair and medium skin, which is perfect for the laser, I would probably see a beauty clinic professional who would be able to assess if your skin tone would work with such a thing.  They then can do a package for about £50 a treatment, but you need at least 6 of them so the home device was better value in the end.

Being confident to ask the questions and getting the diagnostics you want is definitely a good idea.  I was never that brave in my 20s but wish I had taken control of things much younger. I did some reading around how hormone imbalances can affect bowel function, so I am suspecting its all the same part of PCOS, but would be so nice to have a health professional explain all this stuff.

I contacted my GP over changes in symptoms and they wanted to give me a repeat smear in a weeks’ time, so decided to look at private smear to have it earlier.  After talking to someone who provides private GP clinics, she recommended a consultation with one of their GPs with a profession background in women’s health – it is going to cost about £150 for the consultation/smear test but I really just want some support from someone who knows about this stuff.  I would pay that on my car if it needed fixing so therefore no reason not to spend it on myself!

Good  luck on the 3rd November!

5

It took 6 years for you to be formally diagnosed! They leave it far too long. I've always had heavy painful periods lasting 7 days even when I was on the pill. I get those pains in my side's too, sometimes I also feel as though where my ovaries are ache. 

That's the thing, having to lose weight first, easier said then done. That's good about your friends. I only know one person with pcos which is one of my sisters and when she fell pregnant it wasn't planned as she was told by her doctor she couldn't have kids. I'm hoping they put me on something to help with my cycles and helps me conceive. I definitely agree with getting things in order if you both know what you want. Me and my boyfriend have been together 5 years and decided to have a baby once I found out I had pcos, we've spoke and if I can't have, we will adopt too or use his sperm with someone else but I really want to carry our baby and a baby that is half mine and his. Having a baby is probably one of my biggest worries and not having one is one of my fears. I think about it probably everyday. I'm glad I came off the pill when did or I still wouldn't be aware that i have pcos and now I can start and prepare for my future early.

Overall I think I'll come to grips with my pcos, it's my relationship also and long term problems and my health I'm doing everything for.

Philips lumea sounds great I think I might get one! I only want it for my face. Thanks, best review yet smile 

Yeah it is hard though because I feel like they don't believe me so I try to keep telling myself I'm doing it for me not them. Oh really I had no idea there was any relation between pcos and ibs. Yeah I wish to have an appointment with someone that really wants to talk to me and wants to know everything and support me. When I was diagnosed I see the scan picture and knew then I had it for sure but the women wouldn't tell me and just turned the screen away, when I went to my doctors after all he said was you have pcos but can still conceive, that was it! Even though I knew I had it it still crushed me and I knew nothing about what was going to happen, what I could do to help this, nothing! I told my boyfriend but it took me nearly 2 months to actually talk about it properly and how we felt about it and I just cried my eyes out, that's when we decided to start a family as soon as we could. Not only is it effecting me physically, emotionally, mentally etc it effects our partners and our relationships too sad is your partner really supportive? Mine is, he reassured me that no matter what happens he loves me and will stay with me and get through everything together and not split up over this (my sister and her long term boyfriend split up a while after she was diagnosed, I think stress and strain was a part of it, then a few years after being with someone else she fell pregnant)

I'm lucky if i get an appointment with my gp, it took me 2 months to get the last one, and I'm not comfortable talking to my male doctor about it. I'm apparently to young, you have to be 25 for a smear which is ridiculous but I read on a GUM Clinic card that they do smear tests there so I'm going to look into that. That's such a good way to look at it (what you'd spend on your car) I'd pay that to fix my car too, medical can become a lot of money but all worth it I think!  Want to find someone who specialises in women's health I just don't know where to turn or where to start.

Thanks 😃 if they haven't contacted me with a date I will be on to them again.

6

Hi rb15,

A few questions are really needed before a more accurate answer can be given.

1. What is your current age?

2. Do you have any children?

3. Have you ever had a miscarriage?

Thank you.

Regards,

Les.

7

A answer to what ?

22, no and no.

8

So, it appears i do not have an appointment this evenng. The specialist forgot to tell the clinic that she wouldnt be able to do this week.  I have an appointment with a different person tomorrow.  4 day no show so far, longest run in a while!

You might find that your gynae does a smear test when you get to that appointment.  If not you sould be able to request one is done by your pratice nurse.

9

Oh that's not good, at least it's only postponed to tomorrow and not a weeks time! Thats really good, I bet it feels good, I'd feel like I'm just waiting for it to make an appearance. 

Yeah I'm going to ask at least.

Let me know what happens tomorrow, good luck! 😊

10

Hi.  Soooooo....the GP was lovely, had a half hour conversation around the symptoms I was getting, what I was worried about and what was going round in my head. She basically said that abnormal bleeding is often down to three things, cervical worries ie Cancer, or Infection or Hormones.  Given all my smears have been clear over the last 10 years she thinks it is highly unlikely to be anything wrong there, but I am going to have my NHS smear on Friday as I kept that booked in. I have been checked for infections a while back and that is all good, so she explained the hormone cycle and how my brain is telling my body to produce eggs and build up a lining and remove a lining at all different intervals.  She suggested birth control pill to regulate things which might help ease my worries. Also advised something for bowel troubles so it becomes one less thing to worry about.  I would still have preferred to go into a scanner and be checked from head to toe but I did feel much better for talking to her.  My anxiety will probably return in a few weeks but at least a second opinion was in line with the first.  

She did suggest metaforim to help my pancreas deal with the sugars in food, which should help with weight loss, I explained how I wasnt sure about met as it is a drug for when you had diabetes and didnt feel right having it before hand which i knew was daft logic, she did call me out on that, as by going on it now could save me ever getting diabetes in the first place but left it with me to ask my GP to prescribe.

She also explained how potatoes, rice, pasta and bread react with PCOS patients and in essence everytime you eat them, rather than the brain going " I will use that for energy" in our case it goes "I best store that" and puts it right on the belly/hips/bum. So to try and reduce portions of those foods to no more than the size of your fist.

So I am not sure that the private doctors do anymore than the NHS ones, other than give you time to air your worries.  I might see a nutritionist at some point whilst might also help.

 

11

That is really good news! I'm well pleased for ya. Hopefully everything starts looking up for you now.

I hope who ever I see is as good as that. Food plays quite a big part I think, and I think I could deal with not eating potatoes and bread etc :-) 

Sounds like she's probably just as good as a private one.

:D

12

She was the private one, just not the private gynae specialist.  I will still feel better once my smear is sorted. Had  fleck on blood today, but that apparently will be an indiction of ovulation?!

Any news about when you will get your appointment?

13

Sorry, yeah I just read that last bit again lol sometimes one of the things you need most is to just talk about everything to someone medical.

You've had a good few blood free days smile mine has been medium flow for probably the last 3 days and I've got that period feeling,belly ache and lower back aches which I've rarely has since this started.

Ahh right ok, that can only be good :D Is that because of medication your taking? ..did you accept the birth control to regulate things, what one did she give you? 

No, I still haven't heard anything! They said there's a 4 week wait so, as I phoned up last week already and this Monday is the 4 week mark, if I haven't heard I'll be ringing Monday! Ridiculous, I've had this pretty full on since July 11th. I'm sure you've probably mentioned it before, how long have you had bleeding for? 

14

And so the blood returned (just spotting) this morning in time for my exam, which was not at all what I wanted!  

I came off birth control when i was about 25, as just didnt seem appropriate to be on them given the long term problems who hear about, but if it meant have some more regular blood free days i would be tempted to go back on it....however, i have just seen a different GP at my pratice who had a proper look at my cervix, and took some swabs. She says i have something called Cervical_ectropion??  I have just posted a thread about it to see if anyone esle experiences this.

Basically the cells that should line my cervix have dropped a little and are lining the outside of it.  it is these which are bleeding.   I need to see a gynaecologist to get them repaired/removed and a few months later my bright red bleeds shoud stop and it will be just back to my horrendous 7-10 day periods.  

I am relieved that I am being refered to a gynae, but still a bit scared they will find something else!! GP said it will be my hormones which has caused this and nothing too sinister.  As occurs when you get spikes of oestrogen. 

 

15

Oh dear. Typical! 

Yeah I came off because of things you hear about but little did I know I had way more to worry about when I came off. I'm tempted to go back on but we want to concieve. 

Yeah I see that post, I thought it was you! But couldn't remember the number you had in your name rolleyes oh dear one thing after another, they shouldn't leave people like us this long then maybe other things can be prevented. Does this, what you have affect anything else or can cause anything else?

I'd do anything to go back to having my also 7-10 days periods which were heavy throughout along side really bad belly ache and back ache. 

At least you have some sort of an answer, all we can do really is hope for the best and prepare for the worst I guess. The longer I wait the more I'm getting really worried, I'm still really worried I have something more! I think I'm going to call the hospital today, I can't wait they need chasing up.

Might be a bit much but how heavy do you bleed when having this prolonged bleeding?

16

I've just got off the phone to the hospital, the woman was pretty rude and not helpful and now they're saying it's a 6 week wait! They told me 4 weeks.

I also phoned my other hospital and a local clinic about having a smear and I'm still too young, I'm not waiting 3 more years! I'm going to have to ask my doctor when I see him, but I'd be lucky to get an appointment.

Your appointment you had today, was it a general appointment or was this your smear? 

17

6 weeks! From when?  Anxiety management isnt the NHSs strong point.

Have you got a family planing clinic near you? They should offer smears to young women who are sexually active. The reason that they dont do them as routine as it appears if you are under 25 then you may get abnormal results due to hormones settling down. But you should have one if they are clinically indicated. 

It was a routine GP appointment but she carred out a cervical examination and saw this condition.She took some swabs to rule out infection, not 100% that she also took a smear.  All GPs seem to have been reassured that previous ones have all been clear, my last one was 18 months ago. But i guess the gyane might do one - bit nervous about that appointment but glad to be looked at.

You asked earlier about my flow, I usually spot/light flow between 1st - 7th month, random DC in between and then heavy period around 19th for 10 days, which is all sorts of heavy. 

 

18

6 weeks from the date my GP referred me which was Oct 6th. I have my appointment now it's on 12th Nov. Still a long time to be left, it'll be 18 weeks after it started sad but at least I have one now! I don't know what their looking for though as it's a transabdominal scan, I've not had this one done yet, I had 2 transvaginal ones thats how I was diagnosed with PCOS. I'm not sure I'll be able to talk about everything to this person either as my letter says it'll probably be around 15 minutes! and it's in the maternity department so I'm assuming I'm going to be in and out, and they never tell me anything, I have to wait and my doctor tells me.

Yeah I have but they won't do it. I spoke to my GPs wife Friday and she booked me in on Monday to call him so I can ask my GP to refer me for one. 

Your doctor is good, I want a women doctor I think I'd feel more comfortable. That's horrible isn't it feeling nervous, embarressed or worried but yet glad to do it ..The things we have to do!

Looking back mine usually starts light spotting for few days, medium for few days then heavy, a few days spotting then DC and a break. You roughly know how long your spotting and heavinees is going to last, I havent mastered the order mine is yet as it seems to change and breaks have gotten shorter. After my break last month I had 4 days spotting, 6 days medium then a 2 day break with slight DC and after that running up to today I was spotting for 7 days and heavy for last 6 days. The last 6 days have felt like my periods I used to get so i'm going to assume this is currently my period. 

 

19

Hey, how you doing?  Did you get to talk to your GP on Monday?

Not too long until your appointment now, I am waiting for my letter to come through to tell me when mine is. Had some fresh bleeds over the 2/3/4 but seem to be clear at the moment.

Have sorted out drinking 4-6 pints of water a day, going the loo almost constantly!! but does seem to be easing the IBS side of things.  Also started eating less processed foods.  I read up about the GI diet which explained things around the body going "this is a natural food, i know what to do with this" or it goes "this is all full of stuff i dont need/recognise" so it stores it whislt it works out what to do with it.  I liked that analogy!  Have lost a bit of wieght but of course i am resisting losin too much, as i will take it as a negative sign until I get the all clear.

20

Not so good, I'm worried & concerned even more and feel like crap as it's got worse.. about a week ago I said I'll assume this is my period, I'm not so sure about that, it's like my period but way worse. It's bright red and so so heavy I don't want to go out, I'm now using super plus extra tampons and pads and I have to change every 2-3 hours that's when I'm lucky! and it's the 11th day of being like this. I can't believe how much blood I'm actually losing, I was heavy before the last 2 weeks but this is something else.

I didn't get to talk to him I completely forgot to call.

Yeah I need this scan and something needs to be done! I can't let my doctor keep leaving me this long or telling me to wait as it'll stop in a few weeks. It's not stopping and he's not going through it! 

Ahh good, they sending you for a scan or to have those things remove which are causing the bleeding?

That's good, yeah I read up about that aswell, doesn't seem too difficult. There's also vitamins that can help your hormones and your body and cycle get back to normal, I'm not sure how well these actually work. Read this women's story, it might now work for everyone but worth a read

http://www.dailymail.co.uk/health/article-4241/Colettes-story-gives-hope-fellow-sufferers.html ;